Delivery of a patient-friendly functioning report to improve patient-centeredness of dialysis care: a pilot study.

BACKGROUND: Provider recognition of level of functioning may be suboptimal in the dialysis setting, and this lack of recognition may lead to less patient-centered care. We aimed to assess whether delivery of an app-based, individualized functioning report would improve patients' perceptions of patient-centeredness of care. METHODS: In this pre-post pilot study at three outpatient dialysis facilities in metropolitan Atlanta, an individualized functioning report-including information on physical performance, perceived physical functioning, and community mobility-was delivered to patients receiving hemodialysis (n = 43) and their providers. Qualitative and quantitative approaches were used to gather patient and provider feedback to develop and assess the report and app. Paired t test was used to test for differences in patient perception of patient-centeredness of care (PPPC) scores (range, 1 = most patient-centered to 4 = least patient-centered) 1 month after report delivery. RESULTS: Delivery of the reports to both patients and providers was not associated with a subsequent change in patients' perceptions of patient-centeredness of their care (follow-up vs. baseline PPPC scores of 2.35 vs. 2.36; P > 0.9). However, patients and providers generally saw the potential of the report to improve the patient-centeredness of care and reacted positively to the individualized reports delivered in the pilot. Patients also reported willingness to undergo future assessments. However, while two-thirds of surveyed providers reported always or sometimes discussing the reports they received, most (98%) participating patients reported that no one on the dialysis care team had discussed the report with them within 1 month. CONCLUSIONS: Potential lack of fidelity to the intervention precludes definitive conclusions about effects of the report on patient-centeredness of care. The disconnect between patients' and providers' perceptions of discussions of the report warrants future study. However, this study introduces a novel, individualized, multi-domain functional report that is easily implemented in the setting of hemodialysis. Our pilot study provides guidance for improving its use both clinically and in future pragmatic research studies, both within and beyond the dialysis population.

Shared patient and provider values in end-stage renal disease decision making: Identifying the tensions.

OBJECTIVE: To examine concordance and tensions in values among stakeholder groups across the shared decision making process for end-stage renal disease patients treated with hemodialysis. METHODS: A thematic analysis of transcripts from three stakeholder groups: hemodialysis patients (2 groups, n = 17), nephrologists (1 group, n = 9), and non-physician providers (dietitians, social workers, and registered nurses) (1 group, n = 8). A framework of decision-making components (communication, information, decision, behavior, and outcome) guided analysis of values within and across groups. RESULTS: Shared values included communication that informed patients and involved family; information about function, trajectory, life context, and patient experience; behavior to manage diet; and outcomes of function, safety, and survival. Identified thematic tensions in patient-provider values were: personalized vs. routinized communication; shared vs. separate information; managed vs. adherent behavior; and participating vs. protected outcome. Patient behavior emerged as a contested area of control. CONCLUSION: Emphasizing shared values and bridging values conflicts may ease tensions surrounding self-care behavior by facilitating discussions about diet, medications, and consistent dialyzing. PRACTICE IMPLICATIONS: More individualized information needs to be delivered to patients in a personalized communication approach that can still be achieved within a busy dialysis clinic setting.